Day(s) in the Life of a Chronic Illness Sufferer – A Snapshot Account by Sarah Wall

By Sarah Wall

Follow me on Twitter: @me_illness

Follow me on Facebook: Me, Myself and Chronic Illness

Hello Fibro Readers, how have the summer months been treating you? I say this because I know for a lot of people the warmer weather can make their symptoms worse. Wouldn’t it be great to have at least one season of the year when all symptoms just faded or better still just disappeared altogether and never came back? Well, we can hope!

Fatigue and energy levels are symptoms I suffer with all year around, but the summer has that little bit more of a lethargic vibe. It is hard seeing others enjoy the summer months, (although with current Covid times I would not be in a rush to join anyway. Plus, at time of writing this I am still waiting for my second vaccine), when you are stuck indoors having to contend with symptoms, symptom management, oh and trying to play mind-reader for any symptoms that may spring up at any moment because you haven’t paced properly.

I don’t know about you, but I find social media harder work in the summer months. Of course, it is a great tool when it comes to connecting with others and staying in the loop especially if you are for the most part housebound, but it also has its downsides. The biggest being seeing everyone else enjoying themselves. You get the holiday snaps, the exciting announcements, the lavish lifestyles of people you may or may not know. Of course, this can all be exaggerated, but in that moment of watching it you believe what you’re seeing is very much real.

For me this is not shown anywhere more so than in the life of a social media influencer. Social media influencer’s show us every aspect of their lives (or so we are made to believe), and it looks nothing short of amazing! We are shown what they buy, what they eat, what they wear and what they do in an average day or week. The problem being none of these things reflects my own life. I cannot buy the things they buy – a life with chronic illnesses does not make way for endless amounts of surplus cash. I cannot eat the things they eat – not with digestion problems. I cannot wear what they wear – I need to dress for comfort as well as style, and unfortunately having a crop top with a bloated stomach is not my go to look under any circumstances! But most importantly what I do in a day, or a week is nothing like them in any way, shape or form.

There are of course social media influencers and YouTubers who do represent chronic illness life, but nowhere near as many as we need to show a true representation of chronic illness/disability. So, I thought my column today would do just that, give you a snapshot of a few days in my life with chronic illness.

Tuesday

11.00am

I am sure many people will read this and think how am I only just getting up at 11.00am, but the truth is this is extremely early for me. Normally I do not get up until lunch time due to stomach related symptoms. My stomach has always been extremely bad in the mornings and when I used to go out to work, I would be ill with it until lunchtime. I took it upon myself for a while now to stop forcing my body to start working before it physically can, it doesn’t change anything if I do. Therefore, it is easier to sleep through the more difficult parts of the morning, so by the time I get up I am over the worst.

Today is slightly different. Today I know I must do some forward planning because tomorrow I have blood tests at 10.00am, and I need to train my body a bit to get up earlier than it is used to. Getting up early I feel awful, my stomach is reminding me of what a bad idea it is to get up at this time, and therefore the rest of my body is berating me for such a decision.

1:00pm

In the two hours I have been up I have taken my medication and got dressed. Go me! Today’s outfit choice- T-shirt and jogging bottoms with big fluffy slipper boots because despite the bright sunshine outside my feet are freezing. I know I need to shower today because I haven’t in a few days and I don’t want to go to the doctors tomorrow feeling unclean. I cannot face a shower so early on in my day, it will have to wait. Lunch is only small because I cannot overload my stomach.

3:00pm

I have a to-do list as long as my arm, nothing really of any substance, but a to-do list all the same. I find having one gives me a sense of purpose. I know I must plan and pace because of going out tomorrow, still sitting here makes me feel lazy. I hate how I get inside my own head sometimes with how much I can and can’t do. All I can think is what I need to do, but my body is already flagging. Looks like some afternoon TV it is.

6:00pm

I have eaten, taken more medication and existed for the last few hours. Oh, and of course had a much-needed nap.

8:00pm

I have no choice I need a shower. Showers are always a mission impossible episode in my home purely because they can make me unwell, and unfortunately today is no different. Being under the shower not only hurts my muscles from standing too long, but the force of the water makes my skin hurt. My skin is also so sensitive I use hypoallergenic products which even though are designed for sensitive skin leaves mine with a rash like appearance. To top it off I am in my 30’s and have to keep the bathroom door open because of collapsing. Getting out the shower to dry myself is a slow process juggling between moments of dizziness and nausea.

10:00pm

The rest of the evening is spent in front of the television although it is a wrestle to get the volume turned down. My ears are sound sensitive so I cannot bare the sound on too loud. At 10:30pm I need to take yet more medication, but I need it with food. This really isn’t ideal at this time of night, but I need the medication to digest properly so I have no choice. I need it to digest before even thinking about going to bed.

12:00am

I got into bed just after twelve and attempted to read a book I have been harbouring for months. Sadly, the mission was aborted my brain is too like mush to take in what the words even mean. I am exhausted but am wide awake. My pain levels also decided to shoot up just for the laughs and I cannot get comfy no matter how hard I try.

Wednesday

8:45am

I feel like a zombie! Last night I took forever to get to sleep due to pain and now this is way to early for my body to even form a sentence. I am so nauseous, I want to crawl into a ball, but I must eat ready for my blood tests. My stomach will not thank me.

10:00am

I made it to the doctors – just about. It is only a short walk from my home yet seemed to take an age. I am already exhausted. Getting through reception was a challenge because of having your body temperature checked – mine is so low it doesn’t even register on the monitor. I had my bloods done eventually, but because of issues with my blood from another condition it never goes smoothly. I tell the nurses each time about my condition, but I am always ignored like I don’t know what I am talking about, because of course I couldn’t know about my own body.

1:00pm

I have been home for a few hours and relatively ok. I know I won’t even feel the full force yet, this will probably come later – anywhere between this afternoon and a few days’ time. I know I need to take it easy.

6:00pm

I made a huge mistake and ignored my own advice. I decided to go and do something off my to-do list and continue with these feelings of ‘relatively ok.’ The hardest thing about chronic illness that false sense of security it gives you. That hope that it just snatches away as quickly as it gave. Bed cannot come quick enough. 

Thursday

Today was a complete right off as the effect of the last few days came to a head. The getting up early, the travel to the doctors and the interaction with the staff. Today I didn’t leave my bed until the afternoon and then the sofa. Today I am reminded of how limited a life with chronic illness really can be.  

Until next time, stay safe xx

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